Monday, June 27, 2011
Saturday, June 25, 2011
Lucy had a big day yesterday. Her chest tube was removed, arterial line was pulled, pacemaker wires were pulled and sedation was stopped. She woke up a happy, smiling girl. It was so nice to see her beautiful blue eyes again.
We left the ICU and were moved to the Heart Center.
If it sounds too good to be true, it is.
Lucy's blood pressure was really low all night even after receiving dopamine. And in true Lucy fashion, we are back in ICU. Been awake for way too long and we're all in a delirious stupor.
Thursday, June 23, 2011
The main thing today obviously was letting Lucy rest. She slept for 5 hours straight without moving an inch this afternoon. Followed by 3 hours of pure wiggling. It's 10PM now and she's once again fast asleep.
Speaking with the doctors, tomorrow we hope to start taking away some of the toobies that plague our sleeping beauty. On her right hand she has an IV and arterial line, which is boarded and wrapped up. This is referred to as her "clubbing hand", as it works best as a bat. The other hand is covered with a sock secured down with a velcro restraint; child's play for our little Houdini.
She has been doing well on 1 liter of oxygen all day long, which is where she was before surgery. The million dollar question is, will she still require oxygen after she has healed? Time will soon tell.
Our little wiggle monster had an okay first night. She was very restless, trying to find that fine line of just the right amount of sedation.
She is on Fentanyl (among many others), a narcotic pain killer, which causes itchy skin, especially in the nose and face. Poor thing will stop at nothing to scratch her nose, which she literally rubbed raw last night with a sock-covered hand.
Should be an interesting sock puppet show today.
Wednesday, June 22, 2011
Lucy is currently on a hefty dose of three sedation meds to keep her from tearing the ICU apart. She's basically one step away from a horse tranquilizer.
She kicked butt today and we couldn't be more proud of her. She's the toughest little soul we know.
The best news of all, is that she's comfortably breathing on her own on 2 liters of oxygen. We are absolutely thrilled that they were able to pull her breathing tube so quickly after surgery this time.
We are still anxiously waiting to be reunited with our little peanut and can't wait to see her. More updates tonight.
They often say that life isn't fair and for Lucy, that statement rings true. We would give anything in the world to trade places so she never had to feel pain again. She has endured and been through so much already, it breaks our hearts to put her through it again.
Lucy is in surgery now and we are nervously waiting for updates from the rounding nurse. Every time someone walks by, our hearts sink further into our stomachs. It's going to be a long day.
And so begins the second chapter in Lucy's life. A healthy new beginning. For as much love and joy that little bug has in her big heart, she certainly deserves a healthy one.
Come back to us soon, sweet girl.
Lucy Kate Hopkins
This is the story of Lucy, delivered 10 weeks premature, weighing only 2lbs. She was born with Downs Syndrome and multiple congenital heart defects, spending 75 days in the NICU. She has underwent two open heart surgeries in August 2009 and June 2010 to repair her Atrioventricular (AV) Canal Defect, Ventricular septal defect, double outlet right ventricle, mitral valve and extra superior vena cava. We hope she touches your heart as much as she has touched ours.
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